Re: LOIS-ER NOW SUGGESTED!

[Guest guest]

Thanks,

They didnt have peditrics, with our insurance we have to go to our

hospital, no peds,

then be admitted to the other hospital with peds. Her doc wanted to see her

and didnt think she was in danger,

right, we finally got her to drink, shes been playing a little, I dont

understand things. Her doc kept saying

she was not severe enough to be in the hospital, we saw her though. I dont

thing he realized how dangerous it could be with her. But

with the phenergran I got some fluids, and I got 2 wet diapers today, I

think shes starting uphill, I hope. Up until last night she wasnt even

holding pedialye down.

Still worried, but hopefully going up the hill now. We'll see.

Thanks,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/7/2005 9:19:43 PM

> Subject: LOIS-ER NOW SUGGESTED!

>

>

> I would not hesitate but immediately take her back to the ER and

MAKE

> them keep her until she gets hydrated! I can't understand why when they

saw

> she was very hydrated they would then send her to a doc office rather

than

> keep her and make sure someone was able to get the IV in her. Did they

try

> the PICU team to get the IV in? She cannot go on without the hydration.

> Since we have G-tubes we often switch to either Pedialite or a mixture of

> Pediasure and Gateraid and this often helps at a much slower rate than

> normal BUT when they are only going as little as she sounds like she is,

> then she HAS to be hospitalized! Hope this hasn't taken long to get back

to

> you as I don't thin I was online yesterday. Please let me know how she

and

> you are doing!

>

> See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to

see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID,

GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

> Re: fresh muscle biopsies

> > > > >

> > > > >

> > > > >

> > > > > We waited more than a year to get into Cleveland clininc to see

> > Cohen.

> > > > > We

> > > > > then were sent to Parikh, a fellow. It was not pretty. He said he

> > would

> > > > do the

> > > > > biopsy and then didn't. He said things like is in the 50th

> > > > percentile for

> > > > > height for a five year old. She was 6 1/2. He said he did testing

he

> > did

> > > > not do.

> > > > > He sent paperwork to docs we had not seen in years---against my

> > express

> > > > > wishes. He never opened the films of MRIs and CTs even though he

> > asked

> > > > > for them.

> > > > >

> > > > > Atlanta is close to you. Schoffner is at Children's Health Care of

> > > > Atlanta. They

> > > > > don't take medicaid. They also require written preapproval by

> > insurance

> > > > and

> > > > > copays paid in advance. It would probably be quicker to get a

biopsy

> > in

> > > > > Atlanta. It takes about four months to get the report back.

> > > > >

> > > > > If you try Cleveland Clinic, you might be better off finding a

great

> > > > > mito

> > > > doc who

> > > > > will ask Cohen to order specific testing done (ex. Whiteman

at

> > > > Mayo).

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Please contact mito-owner with any problems or

> > > > > questions.

> > > > >

[Guest guest]

Since your still home and she is making some improvements, just really watch

her. If she starts to really be struggling with issues such as high heart

rate, faster breathing rate, fever, lethargy, lack of appetite, less

diapers, diarrhea, etc., I would still take her in. She may get through it

at home, but will take a much longer time to recover and risks

regressions/SLE at a much higher rate doing it on her own. We find that

when we do not hospitalize when our kids are in the condition your daughter

seems to be in, that we end up with regressions in different areas. Some

return to normal after a while and unfortunately others do not. I just want

you to be aware and be careful. If your mommy instinct says she needs

help-get her some! Take care and keep me updated.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Re: fresh muscle biopsies

> > > > > >

> > > > > >

> > > > > >

> > > > > > We waited more than a year to get into Cleveland clininc to see

> > > Cohen.

> > > > > > We

> > > > > > then were sent to Parikh, a fellow. It was not pretty. He said

> > > > > > he

> > > would

> > > > > do the

> > > > > > biopsy and then didn't. He said things like is in the 50th

> > > > > percentile for

> > > > > > height for a five year old. She was 6 1/2. He said he did

> > > > > > testing

> he

> > > did

> > > > > not do.

> > > > > > He sent paperwork to docs we had not seen in years---against my

> > > express

> > > > > > wishes. He never opened the films of MRIs and CTs even though

> > > > > > he

> > > asked

> > > > > > for them.

> > > > > >

> > > > > > Atlanta is close to you. Schoffner is at Children's Health Care

> > > > > > of

> > > > > Atlanta. They

> > > > > > don't take medicaid. They also require written preapproval by

> > > insurance

> > > > > and

> > > > > > copays paid in advance. It would probably be quicker to get a

> biopsy

> > > in

> > > > > > Atlanta. It takes about four months to get the report back.

> > > > > >

> > > > > > If you try Cleveland Clinic, you might be better off finding a

> great

> > > > > > mito

> > > > > doc who

> > > > > > will ask Cohen to order specific testing done (ex.

> > > > > > Whiteman

> at

> > > > > Mayo).

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > Please contact mito-owner with any problems or

> > > > > > questions.

> > > > > >

[Guest guest]

Darla,

I know your going to think I've lost my mind, I'm very

happy about this, but very leary and puzzled. We've

never seen this. She is up playing today, eating, drinking,

holding everything down, no diarrhea so far, she is acting

completely normal. She was a little better yesturday, but I

swear today it's like she was healed overnight. She never,

never does this. 2 days ago she had a hard time even holding

her head up still, she would barely eat or drink, when I did

get fluids in her they would come right back. Hardly any fever

during the entire time. Like I said I'm happy shes acting okay,

but it's very, very odd. I am almost 100 percent sure she was

dehydrated, theres no way she couldn't have been, her pupils

stayed large for most of 3 days, a sign for me shes getting

in trouble, now they too are normal again. I know I'm not

crazy, I think anyway. We're getting wet diapers again, she

was drinking yesturday, but not nearly enough to make such a drastic

turnaround. I'm stumped.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/8/2005 11:06:15 AM

> Subject: Re: LOIS-ER NOW SUGGESTED!

>

>

> Since your still home and she is making some improvements, just really

watch

> her. If she starts to really be struggling with issues such as high

heart

> rate, faster breathing rate, fever, lethargy, lack of appetite, less

> diapers, diarrhea, etc., I would still take her in. She may get through

it

> at home, but will take a much longer time to recover and risks

> regressions/SLE at a much higher rate doing it on her own. We find that

> when we do not hospitalize when our kids are in the condition your

daughter

> seems to be in, that we end up with regressions in different areas. Some

> return to normal after a while and unfortunately others do not. I just

want

> you to be aware and be careful. If your mommy instinct says she needs

> help-get her some! Take care and keep me updated.

>

> See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to

see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID,

GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

> Re: fresh muscle biopsies

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > We waited more than a year to get into Cleveland clininc to

see

> > > > Cohen.

> > > > > > > We

> > > > > > > then were sent to Parikh, a fellow. It was not pretty. He

said

> > > > > > > he

> > > > would

> > > > > > do the

> > > > > > > biopsy and then didn't. He said things like is in the

50th

> > > > > > percentile for

> > > > > > > height for a five year old. She was 6 1/2. He said he did

> > > > > > > testing

> > he

> > > > did

> > > > > > not do.

> > > > > > > He sent paperwork to docs we had not seen in years---against

my

> > > > express

> > > > > > > wishes. He never opened the films of MRIs and CTs even

though

> > > > > > > he

> > > > asked

> > > > > > > for them.

> > > > > > >

> > > > > > > Atlanta is close to you. Schoffner is at Children's Health

Care

> > > > > > > of

> > > > > > Atlanta. They

> > > > > > > don't take medicaid. They also require written preapproval by

> > > > insurance

> > > > > > and

> > > > > > > copays paid in advance. It would probably be quicker to get a

> > biopsy

> > > > in

> > > > > > > Atlanta. It takes about four months to get the report back.

> > > > > > >

> > > > > > > If you try Cleveland Clinic, you might be better off finding a

> > great

> > > > > > > mito

> > > > > > doc who

> > > > > > > will ask Cohen to order specific testing done (ex.

> > > > > > > Whiteman

> > at

> > > > > > Mayo).

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > Please contact mito-owner with any problems or

> > > > > > > questions.

> > > > > > >